"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
~Jeremiah 29:11~

Wednesday, September 26, 2012

Update & Happy Sweet 16 Michelle!

Hi everyone!!

I apologize for not keeping the blog updated more frequently! Life can get so busy... Especially after coming back to life after 6 years of not being able to do anything, I sometimes find it very hard to pace myself and time just gets away from me... I want to go/see/do everything all of the time! ;)

I also recently started taking several classes online through a local university and that has been keeping me pretty occupied. I am loving it, especially my Anatomy/Physiology class :)

However, even with all of the new life excitement, there is never a dull moment around here...

I had a little incident.

The story isn't that interesting or exciting. My electric wheelchair broke and while it was being repaired I was given a loaner chair to use. Long story short, I wasn't used to the speed settings on the new chair... So when I went to go into my house I bumped both of my feet into our sliding glass doors.

Yeah... not my finest moment :(

Anyway... though I didn't hit very hard, it was hard enough to flare up RSD symptoms in my right foot, and pretty quickly.

I began having tremors, increased painful sensations and not being able to control the movement of my foot/ankle. Even though I only banged my toe, the bruises spread to the entire foot.

Within a week the foot looked like this:

That is the really weird thing about this condition... I hit both of my feet equally hard, yet only my right foot developed the symptoms. RSD is a really confusing, bizarre and complicated disease.

(Right foot with RSD, Left foot perfectly fine)

After talking with Dr. Cantu and sending him some pictures of the foot, we knew it would be necessary to go back to Monterrey and go inpatient for a while on a continuous ketamine infusion to stop the process and so Dr. Cantu and the ketamine could fix me once again.

Thankfully the treatment was very successful! I feel very fortunate that it works for me as well as it does.

The pain is down to a much lower level, the swelling is less, the tremors are gone, the bruises are fading and the movement is slowly coming back! I am sure with continued patience and water therapy, it will return.. And hopefully even better than before :)

Because I name everything, I now affectionately call my foot "Footnando"...after Dr. Cantu (Fernando).

I'm not sure if he really appreciates that or not :).... But I appreciate his compassion and continued efforts to help me get 100% better more than he will ever know!

In other Stevens family news, Katherine also went through a very rough flare with her Crohn's disease this past month and had several visits to the ER for symptom control. She is on new medication and seems to be on an upswing for now... Please pray that it continues!

Also this past week we celebrated Michelle's Sweet 16!! I can't even believe my little 'baby' sister is 16!! And is driving!! And is a Junior in High School!!

It's so surreal, in my mind she is still 10! Even though my life stopped during the years I was so sick, it certainly didn't stand still!

Michelle, I love you beyond what words can ever express. I couldn't have asked God for a more amazing baby sister. I can't imagine my life without you and I am so blessed and happy that I was finally able to celebrate your birthday with you! I am proud and honored to be your big sister.

Well, Thanks for checking in on me and for keeping me and my family in your prayers! It means so much.

If you could please keep our neighbor, Christian, a special little 6 year old boy, in your prayers too. He has a rare neurologic disease, called Metachromatic Leukodystrophy (MLD) that has now taken away most of his physical abilities... but not his sweet spirit!

And also my dear Mexican RSD friend, Estefy, who is still in the hospital and really needs pain relief.

...and for everyone else suffering with horrible pain and diseases and a cure for them all... I personally know of way too many people in need of relief right now.

God bless!

Jessica

PS-I am always saying I wish I could find a way to personally thank everyone who helped make my new life possible, and I think I may have found a way...Stay tuned! :)

"Rejoice in all God is planning for you. Be patient in trouble, and keep on praying." -Romans 12:12 (NLT)

37 comments:

Anonymous
said...

Thank you for your updates. Happy birthday Michelle! We appreciate how you've opened your lives and shared the journey of your recovery that you and your family have taken these past years. Your walk of faith is such a blessing. You are a blessing. We stand in awe of your progress and will pray the foot heals very soon! Keep going!

First, Happy 16th to your sister. So great you were able to celebrate as a family! Secondly, Oh ouch- Poor foot!

So amazing you are taking classes! I hope you still have the goal of being a physician in your heart... But If God should lead you in another direction, I am sure you will prosper in whatever you do.

You and your beautiful family continue to touch my heart and the hearts of so many. Please know that you are in my thoughts and prayers every day. Thank you for showing us what loving life and God is really all about! Hugs to all of you and please slow down and rest that foot!

It is strange what happened woth your foot and to think that RSD / CRPS has been around for such a long time yet they still have no cure. Thanks for such an informative post. May God use this to further educate the medical community and bring forth a cure.

Hi jessica and family! Sorry to see the setback with the foot, great that you were able to be proactive and head south for Dr. Cantu to work his magic. I think it is wonderful you are living such a full life... Simply amazing progress. God bless you all!

Man oh man.....what next, eh? Your poor tootsies. It hurts just to look at that foot. We are happy Dr. Cantu was able to give you some relief from the pain and that all in all, you are on the upswing. Going to college? Med school next!

You and your sisters are all so beautiful and we know you treasure that special relationship as much as they treasure their big sister!

We pray your progress and healing continues. May God continue to shine his light upon and inside of you.

Wishing you a quick "foot" recovery...the foot looks very painful, but you look absoulutely wonderful! you are always in our prayers. It's so good to see that you are out and about and enjoying life...Hugs and kisses to you and mom!

Hi Jessica and all the Stevenses! Thinking about you guys! Jess, I'm so happy that you're taking classes! Your brain must be so ready and eager to soak up all that knowledge- you're such a smart young woman and always enjoyed school so much! I pray that Katherine's medication continues to help her. Happy birthday Michelle! Jess, I hope your foot heals completely very soon! Say hi to everyone for me! Love always, Angel xoxoxoxoxo

Jessica, thank you for thinking of all the rest of us RSD patients out here fighting this indescribable pain and as you so aptly put it other "bizarre" reactions. It is so hard to look into the eyes of my family and my courageous pain doctor who have fought so hard for me and yet get worse and worse instead of better. We who know of you are thinking of you and are so proud of you. Thank you again for not forgetting us.

It seems like every time you see a movie or TV show where police officers are involved, they seem to be wearing large sunglasses with mirrors on the outside. What are these shades and how did they come to be what they are today? The truth is that Mirror Sunglasses, as the sunglasses are called, are often associated with law enforcement and government officials for a valid reason.

As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!

Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.

Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.

Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

McGill Pain Scale

RSD is the most painful disease known to medicine

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

Jessica during Ketamine coma procedure in Mexico

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Ketamine

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.